Bitter Greens

May 19, 2009

One day, someday, although my money is on it not being today, I will learn to shut my stinking piehole and not tell the Internet things. This was published yesterday, and you'll notice that I ever-so-casually mentioned that yeah, neither of my kids have any food allergies! Isn't that great? I mean, so far, and all, knock on Ikea end table made of a wood-like material.

So of course after dinner last night, poor Ezra erupted in hives all over his arms and legs. Mama erupted in a case of raging alcoholism.

And because I'm a cocky know-it-all MORON, I'm having a hard time pinpointing what caused the reaction, since while my in-laws were here we showed off Ezra's admittingly amazing palate and appetite like a goddamned party trick, allowing him to eat pretty much anything off the table without keeping track of how many new ingredients he was getting exposed to and how many times. I THINK we can blame it on some spring garlic that I bought by mistake at the farmers' market and just started using in place of leeks (which Ezra has eaten multiple times, which is what I meant to buy but was in a hurry and grabbed the wrong stalks), in a couple of his veggie dishes and stews. And my mother-in-law gave him something else with regular garlic, I think, so...yeah. I was really on the fucking ball this weekend.

It wasn't that terrible of a reaction, as these things go -- he barely seemed bothered by the rash and it never spread to his torso or face -- but irregardless I'm demoting him back to Normal Baby Eating Habits for awhile, all single-ingredient and boring and shit. No more lamb stew with chickpeas and eggplant! No barley and asparagus medley! Eat some stupid sweet potatoes like the rest of the seven-month-old population. Sorry.

***

Tomorrow morning is our IEP meeting with the school district. The last report arrived yesterday, from the school psychologist who observed Noah at the evaluation and at school. Still not getting any easier to read these things. Or write about them. The details are Noah's, not mine. Seeing him reduced to such clinical language, his behavior framed as unrelentingly negative, reminds me that this blog shouldn't do the same, but should be the alternate record, the one with the good stuff, the funny stuff, the stuff about the kid who I love the stuffing out of, no matter what.

Regardless, I think it's okay to share that I am very anxious about tomorrow (Jason too), even though I know we won't have to make decisions on the spot, or anything. (I've dragged my feet on a few health-related doctor forms for precisely this passive-aggressive reason: I want an excuse to stall and hem and haw afterwards.) We're more or less assuming at this point that Noah will qualify for some level of help. My wager on just what level (he could attend as little as two days a week and as often as five, or get itinerant services as needed) changes by the hour.

I was getting pretty comfortable with our initial decision to keep him more or less mainstreamed and send him to Montessori, where at least THERE the teacher observed some of Noah's more -- ahem -- self-directed behavior and immediately framed it as a positive, as a good thing. We're not getting much of that from anyone else, frankly, though I know in order for Noah to qualify for the district's preschool program the evaluators HAVE to make everything sound dire and significant. I don't want to turn down free services for reasons that might have to do more with my own wounded pride than me really truly knowing the level of help my child requires. I also don't want to hand him over to a program -- because it's free, because it's the almighty school district -- that aims to squash the very things that make Noah who he is in the name of getting him to some lowest-common denominator level of "success." I don't want to lose my grip on the fact that we are talking about PRESCHOOL.

I don't want to let him down; I don't want to admit just how lost I am sometimes. I do want to take him out for lunch and then go to the playground. Yes, let's just do that instead.

Comments

Oh sorry for the allergies (darn garlic) and sorry for the report --- it is impossible to read endlessly negative things about your beloved child. You are doing excellently, you and Jason both, and I hope you know that.

Poor Ezra! I'm so glad he wasn't bothered by the rash, though I have to wonder what spring garlic is because I've never even heard of it. I think it's a little sad that your 7 month old baby has a more sophisticated palate than mine.

I love your approach to raising Noah, and I deeply appreciate your dedication to treasuring him for who he is, not who others expect or require him to be. You and Jason are doing a great job.

Wow, hang in there Amy & at least TRY not to freak out too bad. There is no right or wrong here, you just have to trust your instincts & do what YOU (& Jason) think is best for Noah. He'll be fine BECAUSE you are looking out for him.

Are you sure it was food related? I had the same issue with my first child when he was small and, being the first child, and one emergency room visit later we learned it was just a simple cold-like virus that causes hives.

I want to give you a huge hug and tell you it is all going to be ok. B/c it is. As someone once told me, you will never know if the other choice was right b/c you didn't take it. And I am always here to listen and bounce ideas off of.

And I loved the ped. allergist we saw when we thought Michael had food allergies, which he of course didn't. We never figured out what caused him to burst into hives the first time he had peanut oil. So sometimes it is not the food.

As a long-time reader, I'm not sure I believe that...I wonder if you will regret sharing such personal *medical* information about your child without his consent. Sounds like it might be time to revisit your policy about how much you share about him/Ezra.

I'm glad you can see the positive side of a negative-sounding report--Noah's that much likelier to qualify for services and more of them. Might as well load up now at the beginning.

Our school's OT made sure she wrote our son's report so that he would qualify for her services. Not that he doesn't need them, but she wanted to make sure there was no way to say no. Any amount of doom from that initial report is far outweighed by the subsequent reports that give his progress (though always emphasize that there's still more for him to do) and her clear sincerity when she says he's an absolute delight.

I have my fingers crossed that you'll find an experience like that awaits Noah. It is so worth it!

We had our annual IEP meeting with the school district last week. Our almost 4-year-old is completing his first year at the "disability" preschool. He has a speech delay and is amazingly stubborn and quirky. When he was first labeled "special needs" and "speech delayed" I was afraid that all of the wonderful things about my son would be lost behind the curtain of that label. We accepted the school districts plan of 4-days a week with open arms. We didn't know how to help him, so we trusted them. And at the last meeting the teachers raved about how great he is doing and what a bright and sweet boy he is. All of his awesomeness was not lost on them and they see him they way we, his adoring parents, see him. And really, that makes all the difference. Next year he will move to a 3-day/week classroom with less IEP kids and more typically-developing children. The school district always reminds me that as his parents we are in charge and we can call a meeting whenever we think it is necessary to talk about what is working and what isn't. Wow, that was a lot just to say that I've been where you are and the public school "disability" preschools can be AMAZING.

Screw being normal. Can't it be enough for the schools that the kids are happy..? I suppose not, huh, but man... that'd be nice, if success was measured by happiness and how loved one is by their family. Your kid would be king of the world...

Too bad about the allergy- I've loved hearing about what Ezra has been eating, because it sounds like such a wonderful alternative to the junk that most kids eat. Hopefully you'll figure it out soon, and he can be a hive-free champion eater once again.

Something in my gut tells me that things are going to turn out well for Noah. As I've said before, you are so on top of things, you will certainly notice if things aren't going the way they should. If he's not thriving in the district's program, you always have the option of switching directions. There are no hard and fast, never to be changed again wrong answers.

Wow. I've typed and deleted my comment twice, a comment you probably won't even read, because I want to say the right thing, and I have no idea what that is. My daughter, MP, is 10 months old. My struggles are over working, working part-time, not working, could I be a good SAHM, does MP know I'm "momma"?, daycare is good for her, daycare is bad for her, who the heck knows, work is good for me, I'm a good example to her, feminism, hear me roar, etc. Parenting is so uncertain. The moment you declare "Ah ha - answers" (like your "my child doesn't have food allergies") the world throws a curve ball.

The fact that you struggle shows that you are a good parent and a good advocate.

One thing I'd listen for in the IEP (total assvice, I realize). Do they call children children or labels? For example, do they say "We have a lot of autistics (or autistic children)" or do they say "We have a lot of children with autism." It's subtle linguistically, but crucial. In the first, people aren't people first, they're labels. In the second, people are people who happen to have certain characteristics. People should always be people first.

Hang in there, girl! As far as the food goes, don't beat yourself up! After First Baby, not a one of mine was introduced to things slowly, what with older siblings sticking suckers and unwanted broccoli and God only knows what else in their mouths while I wasn't looking.

And, as for Noah, you just keep doing what you're doing. And, remember this, you are his mama, and nobody knows him, loves him, and believes in him like you do. You are doing what is best for him, and in the end, he will be the winner because of how much you have loved him and fought for him. Don't be afraid to go with your gut and do your own teaching and evaluating - no one is more of an expert on Noah than you. Personally, I'm thinking he's gonna grow up to find the cure for cancer or something else freakin amazing! And I'm not even kidding!

No advice on the IEP, as i have no experience with those. I do, however, have tons of experience with food allergies--mine own. The kids, not so much.

Exposing kids to a lot of different foods early on sounds like a splendiferous thing, give them a discerning palate and all that, but it can (*can* meaning possibly, if allergies run in your family) trigger food allergies. My mom was told to start giving me solids at one or two months old. I ate bananas like there was no tomorrow, apple sauce, and pureed green beans.

We realized my daughter had a garlic allergy at about the same time you are realizing it. It totally sucks. It is in everything and they don't have to label foods with particular spices - they just list that they have spices. Great, thanks.

My son is 6 and his story is very similiar to Noah's. He is now in an autistic kindergarten program within our district, after two years of the district's preschool program. He THRIVED in the pre-k program - lots of love and support. I could not have hand-picked a better environment for him. There is nothing worse than sitting in a meeting and hearing all your child's shortcomings. It doesn't much easier as they get older. Please know that you are not alone, it often feels that way.

As a parent, it must be awful to hear such negative things about your child. As a special educator, it is necessary in evaluations to be a critical as possible, so the child can qualify for as much as little as he/she needs. Once the evaluations are over, the teachers tend to be more positive in the classroom environment (at least I always tried to be). The good teachers will celebrate all the little things that Noah will do. They will make Noah, and you, feel proud at what he is accomplishing. Good luck tomorrow and remember that there will be easier days ahead. I will be thinking of you guys.

The rash may not be food related, but may be the same virus that made him feverish. So scaling back on exotic food may not be a bad idea, but if it does not resolve the rash, don't freak out. When the virus and the fever leave, so will the rash. Good luck.

Good luck tomorrow. Been there, done that. You already know, I'm sure, not to sign off on anything and to take it home and read it/sleep on it etc. It may also be helpful to go into the meeting with an idea of what you want for him. Ask for the moon and see what happens.

I know nothing about IEPs or special services for preschool or anything like that. But I do know that the sooner Noah learns to play the "game" of school, the better. My MIL writes books about different types of teaching/learning styles and kids' brains. She says that all kids learn differently and respond better to one teaching method or another, depending on their style. But the most important factor to success in education is playing the game. And unfortunately, the earlier Noah is labeled difficult, the harder it's going to be to get people to see it when he does change.

So follow your gut. Montessori isn't the answer for everyone. Some kids get freaked out by the ability to do whatever they want. Some need direction. For me, I know my son will flourish in it. His current preschool teacher tells me he is going to LOVE Montessori next year. So I am confident it will be great. Will it be as great for my daughter in two more years? Don't know. Every kid learns differently.

Hey Amy -- I've comment to you before about how Noah and my son share many similarities. His preschool teacher actually went so far as to come out and tell me that he would "never be able to survive in a regular public school classroom". Awful stuff. Anyway, he certainly has his challenges (asperger's + dyslexia + a gifted IQ = a steamy load of shit on some days) and he gets lots of services -- but he's surviving (ie, thriving!) just fine! Thankyouverymuch wicked preschool bitch. Anyway, I know this will likely sound like a drive-by (and I SO don't mean it to) but after reading your response on the Smack Down, I felt compelled to asked if you've ever tried/considered the GFCF diet? It makes a HUGE, LIFE-ALTERING difference for my son. So much so that, when he has a really off day, his teachers call and ask if he's eating anything weird. We've been doing the diet for about 18-months and every single time his teachers have called with that question, the answer has been yes. 100% of the time. I know it doesn't work for everyone, but we figured it was worth a shot and we're so glad we tried. FWIW, if you do decide to try, eliminate soy as well (at least at first).

Food allergies are such a pain in the ass. Hoping it is just the garlic and nothing more.

As for Noah, you are such great parents to an awesome little boy. Don't let any of these 'issues' define who he is, to all of us out here he is just a sweet, extremely photogenic three year old and that is how it should be.

Hi, Amy. Hey, I haven't read all your comments so I don't know if any suggested this BUT....my daughter broke out in a rash last weekend (accompanied by a slight fever and a little cold) and the doctor said it's a viral infection, with the rash signaling the end of its course. And it's going around our area....several kids in her daycare got it, too. I read that your guys were sick last weekend?? So perhaps it wasn't an allergy for poor little Ezra but rather a passing virus?? I'll hope for the best. Good luck in all!

For 27 years I've watched my parents fight the good fight -- earnestly, dryly, with plenty of black Irish humor -- for my younger brother (who has Downs and a handful of other issues), and to watch someone from my own generation tackle the IEP/advocacy battle just makes me tear-up. You rock, Amy. You rock for caring, and you rock for writing and sharing. Noah and Ezra are very lucky boys.

I do want to join the chorus and observe that my mother and some of my closest friends are early-childhood special education teachers in the public school system (in California, even -- the land of Prop 13 and penniless schools), and they *really do get it*. They see the beautiful children, the children with unexpected reactions to every day's new flood of stimuli, whose windows on the world have a different slant, and they cherish them. They don't see "problem children", they see children who are making the most of various internal predicaments, and they help them thrive as best they can. Most importantly, they treasure involved, loving parents, because then they know their efforts likely won't be in vain.

That's not to say that special education is composed wholly of saints and bodhisattvas, no. But there are good teachers out there in the schools, and their role is different from that of the evaluators. Sorry for the assvice; getting off my pulpit, now.

Oh, and that's a beautiful photo, btw; so poignant. It really captures the tone of the article. No wonder you love that child so.

We had our IEP meeting with the school district a month ago. I didn't realize so many people were going to be there. I remember feeling really small at that big ass table. I remember bursting into tears when asked if I had any questions. Ummm, yeah!

My biggest question was when did the window of normal become such a tiny porthole?

Just remember, whatever they come up with, IF they come up with anything..... theirs is not a medical diagnosis. Our son is now being evaluated by our pediatrician who specializes in delays, and well, she sees things differently.

It can be so frustrating, but in the end, I think we all want the same thing. I just want to do the RIGHT thing. Best to you.

Been down the IEP road (at the elementary level) and it can be scary and intimidating. I'm actually feeling a little dyspeptic for you, just thinking about it :) Will be sending good thoughts your way tomorrow!

I read regularly, but I don't usually comment. I am a early childhood special education teacher in a public school district. This part of your post really stuck out to me: "that aims to squash the very things that make Noah who he is in the name of getting him to some lowest-common denominator level of "success." Please know, that, while school districts have their issues, most of the people who work directly with children are there to HELP you. We are on your side. We do not wish to squash those things that make a child special, rather we want to help them to be as amazing as they can be. IEP meetings can be very intimidating, especially when it's a room full of people you don't know. But give those people a chance. Generally, people don't go into special education for the money -- they do it for the kids. Good luck tomorrow.

Blah. I've made the same proud statement about my son, who WAS introduced to foods in regular boring baby manner, and who now appears to have a raging allergy to tomatoes. Yeah, thanks for the curveballs, world.

I love the quote "I also don't want to hand him over to a program -- because it's free, because it's the almighty school district -- that aims to squash the very things that make Noah who he is in the name of getting him to some lowest-common denominator level of "success.""

You have hit the nail on the head, Amy. My sister is dealing with autism and my younger nephew. She has observed countless times that my nephew without autism would not be HIM. It is what it is.

Of course, it does not necessarily make any of your challenges right now any easier, but I think you have got it right by recognizing those particular qualities which make Noah "who he is".

Could write a whole page, but won't! Seeing as everyone is giving their two cents worth here's mine. Forget preschool! Life is short, plenty of time for all that. Lots of "playdates" and time with Mommy and brother, pool, park. Much older mother of daughter with mild physical issues and a little Asperger's thrown in for fun! BIGGEST REGRET: Preschool - so not ready for all the "overwhelmedness" it comes with." SECOND BIGGEST REGRET: Public School - lost all faith in the system, you have to "work it" non-stop - especially if they fall at the low end of it all. Biggest Success: Children's Hospital DC/VA - amazing! And therapy for self. Being your childs primary advocate is a lot of uphill work, not for the easily defeated - which you so obviously AREN'T. Good luck and Godspeed :)

"I don't want to turn down free services for reasons that might have to do more with my own wounded pride than me really truly knowing the level of help my child requires."

Oh, Amy. This was me last year. But, take heart. If he does qualify, those schools are still preschools, just with more teachers. Teachers who know EXACTLY how to help your kid. My "just inside the Spectrum" PDD-NOS daughter has made UNBELIEVABLE strides during her year in a reverse-mainstream Autism classroom. (Two thirds on Spectrum, One third Typical.)

I have to chime in for non-food related allergy. We have a peanut, egg and strawberry allergy. They manifest themselves as hives around the mouth and spread to the trunk. Benadryl does the trick, but we carry and EpiPen, no fun.

I hope it goes well tomorrow. It does get easier. My 7 year old was where Noah is right now and today he is in the local public school doing great (with help)I have many IEPs under my belt and this year I didn't cry during the meeting. Take all the services they give. Early intervention + free= goodtimes!

All I can say is my prayers and thoughts are with you. You're doing great, and both your children will be wonderful because they ARE wonderful. While no one likes to applaud worry in a friend, it is a testament to your dedication and love for your children that you DO worry about them. Hang in there, and keep us posted...also, keep on with the photos - they are adorable kids and they make my day.

Embrace all the help...it is like getting more keys to the mystery that is Noah. You have spent precious time wondering if you are doing "enough." Now let others in to your world help unlock the rest of Noah. It will be like getting a Noah+! You will be overjoyed and amazed that you even hesitated...and you will wonder what if we never went down this path of help.

You should see our little five year old...he is so absolutely fabulous - speech, sensory, and motor issues included. Someday he will have the realization of all that we did to make him who he is. We loved him before and still love him today. But, now we have given him the tools to communicate, to move, to live a "typical" life.

I'm not where you are yet, my baby is 9 months old, but we will be there because she has cerebral palsy and we'll end up looking at the disability preschool after we age out of early intervention. I just want to say that I feel your pain, and the advice I hope others will give me when I forget is you will make the best choices for your son that anyone can make, because you love him and you are paying attention. And sometimes you just have to let your kid drive, even if it isn't the way you expect, or "normal" or whatever else.

I recently found out that I'm pregnant with my first child and I found your blog when searching the internet about my constant hunger. Anyway, I've been hooked ever since and I think that if I can be half as good of a mom as you are to your two boys, I will be just fine! And I love how you do it all with some humor! Hang in there!

My son did the spontaneous hive eruption thing a couple of times when he was around Ezra's age and I was interested to learn that those hives can be viral and are often their little bodies fighting off some stupid virus. So maybe he still is a super eater! :)

Oh Amy, I hope it goes well tomorrow. I have posted before but to repeat - my son is somewhere on the autism rainbow and it was a hard decision for us to put him in developmental preschool, but it was a decision that was sort of made for us, as he was deemed to great a security risk to go to a 'regular' preschool and have the therapists come there. He has really made great strides in his (almost) one year there and he is still the same person. I have found remarkably little personality squooshing going on. He is still him and he is still my little boy but he is ... better. He is more communicative and he (and this is the most important thing to us, right now) listens to simple requests/commands, like STOP! And NO! Because we were unable to get him to stop or listen to the word no and I was really afraid to go anywhere with him. Our lives are much more manageable now and although I don't know where he'll end up, mainstreamed,in special ed for the rest of his career, living with us forever, etc., I don't care, either. I just want to do what's best for him and I know you and Jason do too. Hang in there and I hope, again, that it goes well. Remember that even though their language is coarse, most of the people in that meeting are there because they care about kids/your kid. Good luck!